After bouts of sickness Will got the ‘all clear’ from a ‘just-to-be-sure scan’ – minutes later our worst fears came true
WILL Rainsbury was a “typical” little boy, “full of beans and pretty naughty”.
“He was very sociable, always looking to have a bit of fun and play a trick on someone,” his dad John recalls.
But John and his wife Lee-Ann’s happy family life was shattered when they took him for a precautionary scan following a few episodes of morning vomiting.
Will maintained his mischievous nature when he was diagnosed with an aggressive brain tumour in 2018, aged just five years old.
The couple, were initially told there was nothing to worry about, but minutes later a consultant walked into the room.
They’d spotted a tumour in Will’s scans, so small they’d missed it at first glance.
The growth turned out to be medulloblastoma, a fast-growing type of tumour commonly diagnosed in children aged three to eight and accounting for 15 to 20 per cent all childhood brain tumours.
Will was diagnosed with a group 3 medulloblastoma, as it had already spread from his cerebellum to other parts of his brain and spinal cord.
Tumours of this grade are effectively incurable, as specific genetic traits can trigger rapid disease growth and make treatment challenging.
The tot underwent surgery as well as gruelling rounds of radiotherapy and chemotherapy to shrink the tumour, but just two weeks before it was due to end, his family were told that Will’s cancer had returned.
Will passed away aged six on Valentine’s Day 2019, just nine months after he was first diagnosed with cancer.
John – who is also dad to Josh, nine, and Charlie, born two weeks after Will passed away – has since made it his “personal mission” to spare other families the pain that his own went through after his son.
He founded the charity Little Hero in memory of Will, which was one of seven charities – including Children with Cancer UK and Cancer Research UK – to fund a £5million research programme led by Newcastle University into group 3 medulloblastomas.
Led by Professor Steve Clifford, director of Newcastle University Centre for Cancer, the research programme – dubbed INSTINCT – set out to identify key genetic traits associated with the disease in the hopes of spearheading new forms of treatment.
Findings of the two phase study were published earlier this year, with researchers saying they could form the foundation of more targeted treatments for children with group 3 medulloblastoma.
John tells Sun Health: “On [Will’s] behalf, I want to be able to point to a group of individuals who – if we hadn’t got on this journey – would have had the same fate as Will, and we’ve been able to avoid that for them.
“He was a huge fighter and we’re trying to carry that on for him.
“I think he wouldn’t have cared a button about the research, but the outcome he would have.
“If we can avoid other families having to have the same outcome we’ve had, that’s the legacy.
“It’s a difficult one to achieve, but we have to strive.”
THE SUBTLE FIRST SIGN
Will was just five years old when he started showing symptoms of the cancer in May 2018.
According to John, they were surprisingly subtle.
“With brain tumours, you think the signs would be really obvious, but often they’re really not,” he explains.
“Will had been feeling nauseous, but just in the mornings, a little bit like if he was pregnant.”
But within the next hour, Will would be “absolutely fine” and have “no other symptoms” for the rest of the day.
John and Lee-Ann took their little boy to the doctor and were told he probably had a stomach bug, which would clear up soon.
After Will’s symptoms continued, they went to Bristol Children’s Hospital so the tot could be checked over more thoroughly.
John says: “We went in literally feeling like the worst parents in the world because we were going to waste everyone’s time.
“Will walked through the door and asked, ‘Can we go for a burger after this?'”
You don’t know where you are. The floor gets dragged out underneath you and you are just in free fall at that point
John Rainsbury
Doctors performed various checks, including a CT scan “just to be sure”, initially giving the parents the all-clear and telling them they could take Will home.
But minutes later, John and Lee-Ann’s worst fears were realised.
“I’ll never forget the situation,” John says.
“We had a consultant come in; they had missed something when they first looked at the scan.”
What is medulloblastoma?
Medulloblastoma is the second most common type of brain tumour in children.
It develops at the back of the brain in the cerebellum and is fast-spreading.
Around 52 children are diagnosed with medulloblastoma every year in the UK. Adults can also get it, but this is rare.
Symptoms often develop over several months and may not be noticeable until the cancer has spread. These include:
- Headaches (particularly in the morning)
- Feeling or being sick
- Double vision
- Finding it hard to sit or stand unsupported (children might fall backwards)
- Problems walking
- Stumbling, falling and general clumsiness
- Being irritable (kids might take longer than usual to settle)
- Appetite loss
- Behaviour changes (children might interact with their siblings less)
- Increased head size
- A swollen or soft spot on the top of the skull
On average, around 85 per cent of children diagnosed with medulloblastoma survive for at least five years.
Source: Cancer Research UK and Brain Tumour Research
Upon closer inspection, medics had seen something that looked like a brain tumour.
“It was as much of a shock for them at the time as it was for us,” John says.
“It’s not something that they see every day and we had literally come in with what we thought was a troublesome tummy bug, but suddenly we were faced with a brain tumour.
“I think that was probably the start of the spiral for us.
“You don’t know where you are.
“The floor gets dragged out from underneath you and you are just in free fall at that point.”
GRUELLING TREATMENT
Things moved pretty quickly after that point, with Will getting seen by a consultant that very night to plan his treatment.
John described Will’s medical team as the “rocks” that the family held onto as their world “shattered” around them.
Despite being caught early, it soon became clear that Will’s tumour was high risk and fast-growing – spreading through his cerebrospinal fluid (CF) and coating parts of both the brain and spinal cord.
The five-year-old’s treatment was “pretty extreme”, as he underwent a 12-hour surgery during which surgeons removed a golf ball-sized tumour.
He was always the strongest person in our family during that whole process. Always with a smile on his face, always coming at it with good spirits
John Rainsbury
Will then endured 32 days of radiotherapy and six months of chemotherapy.
John says: “I think he coped with it pretty well.
“We shaved our hair off together, which was more shocking for him watching me than the other way around.
“As a five-year-old, the word cancer doesn’t mean anything.
“He was aware he was being sick, aware he was getting tired.
“And with hindsight, I wonder whether he was aware of more symptoms than he was communicating.”
There were certainly challenging moments during Will’s treatment – he grappled with nausea and trouble eating during radiotherapy and having to pee multiple times an hour as the chemo was flushed out of him with water.
But John says his son served as an “inspiration” to the rest of his family and staff on the ward.
“He was always the strongest person in our family during that whole process,” the dad adds.
“Always with a smile on his face, unless something particular was happening, always coming at it with good spirits.
“He would be the cheeky person on the ward.
“He would be given gifts and one of them was a little Nerf gun, which he would crawl around the ward trying to shoot the nurses with.
“And they over-polished the floors, so he would try and slide on his socks as far as he could whilst holding his drip trolley.
“This is a full-of-beans five-year-old still enjoying life whilst going through what the worst it could throw at him.”
‘DEVASTATING LOSS’
Throughout his radiotherapy treatment, Will’s CF was tested for traces of cancer through lumbar punctures and it got to the point where it was clear.
But in January 2019, just two weeks before Will was due to finish chemotherapy, his parents received the devastating news that the cancer had returned and it was once again in his spinal fluid.
“Unfortunately, because he had relapsed during treatment, essentially it meant that the treatment was ineffective, so he came off it,” John explains.
“We were on a curative pathway up until that point.
“When someone says to you, ‘The treatment hasn’t worked’, you’re automatically thinking, ‘OK, well, what’s the next plan?’
“But there wasn’t another plan.”
With the help of Will’s doctors, the family looked into a number of experimental trials for brain tumour treatments in the US and Europe.
Needing to explain that to a three-year-old about why their brother’s not coming back was pretty tough
John Rainsbury
The tot also had a small plastic device called an Ommaya reservoir implanted into his brain, which allows medicine to bypass the blood-brain barrier and be delivered directly into the brain and spinal fluid.
But as these efforts were being made to “solve the unsolvable”, Will was getting weaker and starting to exhibit symptoms from the tumour’s spread.
For the first time since he’d been diagnosed, he began suffering seizures.
John recalls: “We thought we were lucky enough that we had avoided all of that, but it came with a vengeance when we were in relapse.”
The seizures got progressively worse and Will suffered a particularly intense one that he didn’t wake up from.
“We were in hospital with him for about a month before he passed and we unfortunately lost him on Valentine’s Day in 2019,” John says.
“Not that I ever really liked Valentine’s Day beforehand, but it’s definitely not one for celebration now.
“It was devastating for us as a family.
“Needing to explain that to a three-year-old about why their brother’s not coming back was pretty tough.”
HELPING OTHERS LIKE WILL
John and Lee-Ann founded their charity Little Hero in memory of Will – who was “a little hero” throughout his battle with cancer – and to help other children in his situation.
The dad says they’d been “very aware” at the time of Will’s relapse that there hadn’t been any trials for high-risk medulloblastomas in the UK.
“I had reached out via some of the doctors who supported us on Will’s journey because I wanted to try to drive more options for kids,” he says.
“We went about fundraising for money to support new research efforts.
If you’ve got a five-year-old who dies and loses 80 years of life, how do you compare that to grannies and grandpas, who might get cured and get an extra year or two?
John Rainsbury
“We were very conscious of a few facts which we didn’t have time to think about during treatment, but in retrospect are mind boggling and we wanted to try and solve some of that.
“For group 3 and group 4 medulloblastomas, ultimately the combination of surgery, radiotherapy and chemotherapy – though there would have been incremental improvements on any one of those three – is the same treatment that I would have received 30 years earlier.
“I remember thinking that was really bizarre. How many of us have a car that’s that old, let alone the medical treatment that’s that old?”
John was also concerned by the fact that only two per cent of funding for cancer research tends to be allocated to childhood cancers.
“That is partly because I think case numbers are enormous with adults, case numbers in children are a lot less,” John says.
“But you can imagine the percentage that then goes to brain tumours,”
As a parent, John thinks “the wrong measures are used”.
“Case numbers are one factor,” he adds.
“But the thing that really strikes me is actually time lost.
“If you’ve got a five-year-old who dies and loses 80 years of life, how do you compare that to grannies and grandpas, who might get cured and get an extra year or two?
“Neither of those scenarios are right, but when the funding picture is so skewed, you have to wonder, is that the right percentage?
“We are talking about 98 per cent versus two per cent here. There’s a big difference.”
He also questioned how much of a voice children and teens have when it comes to cancer research funding, compared to adults.
A FIGHTING CHANCE
Addressing why he’d chosen to fund the recently published INSTINCT papers, John adds: “There is an almost ingrained priority with research about wanting to achieve something tangible.
“It’s often easier to do a piece of research which you know you’re going to get a good result from.
“But when we’re talking about things which are essentially incurable, like certain types of medulloblastoma, getting a good result is quite a difficult thing to do.”
He says it’s “really important” that organisations are willing to invest in research that isn’t guaranteed a positive result.
“The reason we got involved in [the INSTINCT] research programme is testament to this,” John states.
The INSTINCT research – comprising two studies published in the journal NeuroOncology in October this year – “really rang like we could have an impact”, he explains.
Prof Steve Clifford, who led the research, said the first study shed light on how to recognise a group of group 3 medulloblastoma tumours “which are essentially incurable using current therapies”.
The second study could pave the way for targeted treatments for the cancer, as it examined how the tumours are driven by the presence of a gene called MYC, which triggers rapid disease growth.
How is medulloblastoma currently treated?
Treatment for medulloblastoma could include a combination of surgery, radiotherapy and chemotherapy.
The first course of treatment is usually neurosurgery to remove the tumour.
However, if your child’s tumour has caused a build-up of cerebrospinal fluid (CSF), the surgeon may first need to perform an operation to reduce the pressure.
Following surgery, radiotherapy is often used to destroy any remaining tumour cells.
It’s normally given to the whole brain and spinal cord as medulloblastomas can travel through the CSF to the spinal cord.
If a child is aged under three, whole brain radiotherapy is usually avoided and high-dose chemotherapy may be used instead to delay or eliminate the need for radiotherapy.
In some cases, children older than three may be given several cycles of high-dose chemotherapy before or after radiotherapy.
Source: The Brain Tumour Charity
John says: “The bit in there which is exciting for me is there’s been some confirmation around this particular target, the MYC target, which they’ve known has been pretty critical for this particular type of cancer.
“If you have this MYC gene overexpressed, it drives a much faster disease progression, so it’s almost impossible to control.
“The research has found that using the right inhibitors, if you can switch off that overexpression, it significantly reduces the speed of growth of the cancer itself.
“Now, that doesn’t necessarily create a pure cure in itself, but it gives those kids that didn’t have a fighting chance a fighting chance.
“The next thing will be finding the right inhibitors in real life situations to be able to make that happen. So it’s step one on a multi-step process.
“We’re about 18 months into the five-year programme. We are hopeful of more to come from this.”
John said the studies marked an “exciting time for research into brain tumours”.
“If I go back to Will’s treatment, if you had standard risk or high risk tumour, they gave you a bit more of the same treatment, with the hope being a bit more of it will be enough [to eradicate the cancer],” he adds.
“Whereas now the focus is on trying to develop really targeted treatments that target the specific genetics of that disease.”
Targeted treatment may be more effective at shrinking tumours while improving patients’ chance of survival, as they’ll experience fewer side effects, he explains.
Improving the odds of patients with group 3 medulloblastoma “has to be the primary goal”, John adds.
He estimated that about 50 per cent of kids with the disease will probably pass away due the presence of the MYC gene.
“For every 100 kids, which is about the amount that get this in the UK each year, about 10 will get the low risk version. But then about 30 will get group 3,” he says.
“That’s probably 15 deaths straight away each year and every year.
“That’s an enormous cause of five-, six-, seven-year-olds passing away unnecessarily.”
Will's legacy
Aside from research – which Will “wouldn’t have cared a button about” – the little boy’s legacy endures through Will’s Woodland, a free holiday retreat set up by Little Hero for families affected by childhood cancer.
John and Lee-Ann’s woodland cabin in Devon welcomes around 50 families whose kids are going through treatment each year.
“There’s only one cabin, it’s in the woods, there’s no one else around,” John says.
“If you are on treatment and you might have a compromised immune system, you can’t really go off and spend lots of time in public with lots of other people.
“So this is just an opportunity for families to get away, have a bit of time out of the hospital just to themselves and just be as a family rather than having the beeps and whistles of hospital and the noise of everything around you.
“Hopefully families, even in the worst situation, will be able to develop memories of their children which aren’t necessarily with a polished floor and a drip trolley.”
John isn’t particular about how he’d want his son to be remembered – just that he is remembered.
“There’s nothing better from my perspective than if I bump into one of his friends or one of their parents and the conversation goes on to Will,” he adds.
“Just that he’s in people’s thoughts is enough. And if that can have some sort of meaning in terms of the wider public, all the better.”
To find out more about Will’s Woodland and Little Hero, visit their website here.
You can donate to Little Hero here or get involved with fundraising.